Epilepsy and mental health wellbeing

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Why am I struggling?
Medication and mood
How epilepsy can affect your feelings and mental health
 How do I know if my mental health is suffering?
Getting help for your mental health 

Why am I struggling? 

As a young person with epilepsy, there are things that you’ve had to think about that your friends might not have to. Things like the fear of seizures, taking medication, and trips to see your epilepsy doctors are all things you might be dealing with, along with all the other parts of growing up and everyday life.  

Mental health struggles can affect anyone, but having epilepsy can make it worse. This can affect your feelings, how happy you are, and your relationships with friends, family and loved ones. Mental health struggles can also affect your body, and  make it harder to take care of yourself. 

If you’re struggling with your mental health or your feelings, then it’s important to know that it’s ok - you’re not alone and there’s help available. 

Anti-seizure medication and mood 

Your meds, epilepsy medications or anti-seizure medication (ASM), are important for managing your seizures, but some can also negatively affect your mood.  

If you are struggling with your mental health, it’s possible that your meds might be having an impact.  

ASMs work by affecting brain cells, and chemicals called neurotransmitters, to help manage seizures. Our neurotransmitters also help with managing our emotions or feelings. This is why some people find that their ASM can affect their mood.  

Different ASMs work on different brain cells and neurotransmitters. Some might improve your mood, whilst others might make it worse. So, a different ASM may work better for you if you’re struggling with feeling low. This will depend on the ASM you’re taking, along with any other medications you might be taking. Your epilepsy doctor or nurse will be able to talk to you about it.  

If you think your medicine is making you feel worried or sad, it’s important to tell your epilepsy doctor or nurse. They can talk to you about maybe changing your meds to see if that may help.   

Find out more about ASMs and side effects

How epilepsy can affect your feelings and mental health 

Apart from your meds, there are other ways that epilepsy might affect your mental health. The fear of having a seizure can cause anxiety. You might be worried about having a seizure at school or college, or when you’re out with friends.  

Your epilepsy might make learning at school harder or make it tricky to do some of the things you want to do, like starting work, going out to pubs and bars, dating, driving, or travelling.  

We also know that it’s normal for someone with epilepsy to feel anxious or low before a seizure. Some people also feel confused, sad, worried, or irritable in the hours and days after a seizure. If you go through any of these things, know that you’re not alone.  

Because of all the challenges that come with epilepsy, young people with epilepsy can feel worried or sad more often than others who don’t have epilepsy.

If you’re struggling, just know you’re not alone and you deserve help and to be happy
Young person with epilepsy

How do I know when to get help with my mental health? 

Feeling sad or worried sometimes is normal. Everyone gets upset and has anxiety sometimes, especially if you’re going through a change in hormones such as during puberty, or just before a period. 

So, how do we know when we’re having a normal mood change, and when we should be thinking about our mental health?  

It depends on how long the feeling lasts for and how strong the feeling is. Feeling on edge, worried, upset, or down for the whole day for weeks on end is not a normal mood. This can be a sign that you’re depressed or anxious. 
 
The words ‘depression’ and ‘anxiety’ are commonly used, so it’s helpful to understand exactly what they mean. 

  • Feeling low, sadness, despair, or tearful. 
  • Feeling hopeless or stuck. 
  • Feeling unmotivated, numb, or empty. 
  • Feeling guilty or like everything is your fault. 
  • Feeling anxious, constantly on edge. 
  • Feeling like you’re not good enough, low self-esteem.  
  • A sinking feeling in your stomach like something bad is about to happen. 
  • Easily irritated or angry. 
  • Tired and fatigued all the time, even after sleep. 
  • Unable to concentrate or remember things. 
  • Having trouble making decisions.  
  • Uninterested in the things you enjoy (from food and sports to sex). 
  • Eating more or less than usual. 
  • Not spending time with friends or family.  
  • Having thoughts of hurting yourself.  

You may have some or all of these symptoms, some or all of the time. If you’re having thoughts about not wanting to be here anymore, or thoughts about hurting yourself, speak to someone or get help from an organisation such as The Samaritans, The Mix or SANEline straight away. 

Find out more about depression

  • Intense feelings of nervousness 
  • Worrying and panicking 
  • Feeling like something bad is about to happen 
  • Finding it hard to go to sleep, or waking up in the night 
  • Feeling restless or unable to relax 
  • Finding it hard to focus or concentrate  

In your body, you might notice:  

  • Sweating 
  • Fast heartbeat 
  • Hyperventilation (breathing too fast and too deep) 
  • Feeling sick 
  • Stomach pains 
  • Shaking 
  • Muscle pains and tension 
  • Flushing of the skin 
  • Dry mouth 
  • Feeling dizzy 
  • Headaches 

Again, you may have some or all of these symptoms, some or all of the time.  

Both depression and anxiety can affect your day-to-day life a little bit, or in a bigger way where you’re unable to do the things you normally do. Everyone has different experiences  with their mental health, so your anxiety might look totally different from someone else’s.   

Find out more about anxiety

A young woman talks at a round table.

Real Talk: Mental health in our community

Check out this round table of young people with epilepsy discuss their mental health experiences. In this episode, they discuss anxiety and low mood.

Watch the full playlist here

Getting help for your mental health 

If you’re struggling with your mental health, help is available. If you’re dealing with tough thoughts or feelings that are messing with your day or just weighing on you, please reach out to someone. You really do deserve support. 

Speak with your epilepsy doctor or nurse about how you’re feeling. They’re there to help. You’re not alone. Many people go through mental health struggles, they are common and they are treatable5. 

Your medical team might talk to you about changing your meds. They can also get you a counsellor or specialist if you need extra support with your mental health. You may be able to have talking therapies such as cognitive behavioural therapy (CBT), either face to face, or via phone or video call6. Many people with epilepsy find that CBT helps with their mental health7.  

It might be helpful to record your feelings in your seizure diary, if you have one, or in another notepad or diary. Some people find recording their emotions makes it easier to show their doctor what they are going through.  

You don’t have to keep feeling this way — the right help can really make life feel better. You can talk about anything you want. You will be listened to, and you’re not going to be judged for being honest about your mental health. If you’re struggling find out how you can get support from us and other organisations here. 

People with epilepsy sometimes have extra things to deal with, so it’s completely okay if they feel worried or sad sometimes. Everyone has feelings, and they deserve kindness and support. If you are struggling with your mental health or feelings, know that you are not alone, and there is help and support available for you whenever you need it. 

#OnTopOfEpilepsy

On Top Of Epilepsy mental health campaign for young people with epilepsy

#OnTopofEpilepsy campaign

Charlotte Heighton

The Youth Voice Network have played an integral part in the #OnTopofEpilepsy campaign - see how we have achieved success!

The Channel

A space for young people, aged 13+, who are living with epilepsy, for them to share, learn and find support.